What type of facility?

Ed1937

I'm finally admitting that it's getting to be too hard, too often.

She knows everybody, seems to be fairly normal in a lot of ways.

She does not have any other major health issues at this time. 

She does not wander.

Her ability to communicate continues to get worse because she substitutes "three to elevens" for any and all words she can't find, and that is often.

She often does not know where the bathroom is.

If I'm not watching her (I always am), she might use something inappropriate for a toilet.

Her balance is not good, and she is a fall risk.

She is double incontinent.

She is mostly not cooperative, but not violent or aggressive.

Hygiene is nowhere to be found unless I force it.

There is a good chance that medicaid will be in our future, and I would rather not move her unless necessary. But I want the best I can afford for her. Am I looking for MC or nursing home? Pros and cons? I'm not ready to place her, but want to be ready when needed.

Quilting brings calm

I have no advice for you on this other than I think you are asking the right question by leaving out assisted living.  She’s definitely past that point.   I would this the answer concerns whether she has any issues that would require skilled nursing since she has no major medical issues beyond the inability to do the ADL and IADLs?  I will be interested in the answers you get.

Rescue mom

IME a “nursing home,” or often called “SNF” for skilled nursing facility, is for people with more actual physical problems, like Parkinsons or kidney disease, or cancer— something that’s treatable or needs medical care.

People with dementia, who usually “just” have cognitive problems, go into MC, or maybe Assisted Living (AL). AL services can vary widely and run a huge gamut, but are generally not enough, or not for long, for a PWD. 

One very general guideline I hear a lot in support groups is that if the person cannot ask for the help they need—is unable to say help me do whatever—then they are past ALF and need MC. But again, much depends on what the particular facility provides, and what each individual’s issues are.

Just from what you said, about no major health issues, she doesn't need a SNF or nursing home now. And since she can’t toilet, my guess would be that MC is needed. But if she has or develops  certain physical issues, then maybe?

loveskitties

This is what I have found from placement for my dad:

The Memory Care facility that had room does oral meds but not injections or IV meds.  They also do not staff for care of a perm. internal cath.  They have an RN on call, a MedTec on every shift to administer oral meds, aids who see to their personal care such as showers, getting them up, dressed, and to meals and see that they are able to be in social areas such as TV gathering area or activities room.

Nursing homes/skilled nursing facilities are licensed to provide more and other medical care.  

The facility regardless of which you contact will review the needs of the patient and determine if it is a good fit.

Since your LO does not present with other medical issues, MC would probably be the best fit.  Just know that if issues do arise, a transfer to a SNF might be required in the future.  You will want to know from the facility you select, just what those conditions would be.

Stuck in the middle

It sounds like memory care to me, Ed.  SNFs are good for wound care after surgery, rehab after a fracture, treatment of labile hypertension, and the like, but I don't think a person who needs supervision but has no other significant health problems would qualify for admission to a nursing home.

Our wives are already in MC in a way, except we are providing it at home.  When I need help, I plan to get it.

JoseyWales

When I was looking for placement for DH, three different nursing homes came out to assess him. All 3 had regular nursing home type care and memory care in their facility. They all gave their opinions on where he'd best fit. One of the homes even had 2 levels of memory care.

60 falcon

It shouldn't be, but money is a huge factor in the decision process.

 It's been talked about fairly often here that AL/MC often requires private pay for a certain amount of time before they'd accept funding from Medicaid or one of the various waivers that some states offer.  Some of these MC places might not accept Medicaid at all? I've found this to be true during my own search for LTC, and they seem to need two years worth of private pay.  That's a deal breaker for a lot of folks.  I'm right on the edge of being able to afford that and it would consume all of our savings and my wife's sources of income.  

On the other hand, Medicaid will pay for care at s SNF, even one with MC.  My attorney told me he can get my wife qualified for Medicaid and protect 100% of our assets, minus her income.  

I believe memory care would be the best for my wife, but financially it's a no brainer to go the Medicaid route, and hope that I can get her in the one SNF with a MC unit. I'm only 57 and hope to have a few years to live after all this is over. Do I risk my own financial stability to provide the best care for her, and she's certain to die from this.   

It's a good question Ed, and an especially though one for folks without lots of resources.

M1

Ed my heart is with you if you are starting down this path too.  I know you need the help as much as I did/do, if not more:  we haven't crossed the incontinence line yet.  

My hand was forced, I hope you can go into it in a more unhurried fashion.  Hard to make yourself cross that line though, I know for sure.  

Jo C.

Hello Ed, you are wise to be looking at this in the here and now.  NHs are not just for medical issues, many become NH residents being bed bound or bed/wheelchair bound who require more personal care at a higher level.

It appears from your description that at this point in time, your wife would be best served in Memory Care.

With Memory Care, some will accept Medicaid, but others are private pay only, so it is good you have tiime to check this first when screening MCs to ensure that when your wife needs Medicaid she can continue her care where she is. 

In Memory Care, the residents do not require the same level of personal care that is seen in a NH.  One thing though, depending on how the Memory Care Unit is licensed, one needs to do a little checking before admission.   Will the unit accept incontinent residents that cannot change their own pullups, etc. (This was an issue at one facility we screened.)  Will they continue to care for a person who is doubly incontinent?  Most do not permit bedside commodes or urinals.

Will they care for a resident who is no longer ambulatory?

What type of training has staff had with residents re communication and with those who may at times act out?   Is training ongoing?

If the resident gets to a point where they cannot easily rise out of bed or a chair and needs a one person assist to do so, will this be a problem - if it becomes a two person assist to help with this, is that a problem?  Some MCs will okay a one person assist, but not a two person.  We also ran into that.

Will they accept or continue to care for a person who needs a walker?  If they need a wheelchair?   Some do, others do not like equipment. Actually found this at a place that "cherry picked" their residents. It was like the Stepford Wives MC.

Will they continue to care for a person to the end of life - this is not always easy to find.   When we placed we were told that yes, they could go to end of life and even had Hospice Beds - marketing director speaking - turned out all of it not true.  Best not to buy what a marketing director tells you; they get rewarded on filling empty beds and must do so to keep their jobs. Confirm and confirm again.

What happens if the resident wants to eat privately in their own room and refuses the dining room with the other residents - is that an issue?

Good to be careful about staffing and type of staffing.  Not all MCs are the same with the amount and type of staff.  Do check staffing for all three shifts.  Nighttime is as important as daytime because many of the residents wander the halls at night.  Some MCs actually have activities at night for those who are "busy" at that time.

Will they match her for a roommate with someone at her level of function and who is not noisy and obstreperous?   Will they seat her at a dining table with others who function at her level?  This became a significant issue for my LO.

If being outside is important, do they have a secure gated outside area for walking? 

It just may be that with increased socialization and available activities, your wife may benefit. Eventually she will need care at the NH level, but it does not seem so right now.

Best of luck on the screening and as said, you are very wise in doing it this early so you know what suits best.

J.

dayn2nite2

Money may be the deciding factor.  Ideally you don't want her to have to move if she is placed, so what type of facility does Medicaid in your state cover?  For me, I only could choose a NH, as Medicaid did not work with MC or AL, so the choice was easy.

The majority of the residents had some level of dementia anyway.  My mother went in ambulatory, able to toilet herself with assistance finding her room and cleaning up, she could feed herself, but unable to dress herself.  They accepted her Medicaid pending, they took care of her through all the rest of her life, and the only move she made was from 1st floor to 3rd floor when she went on hospice in the NH.

jfkoc

Plan B...always a good thing to have on hand. Taking a good look at the Gold Standard will give you an idea of what to try for.

https://www.thehearthstoneinstitute.org/

https://www.abesgarden.org/

Whether NH or MC you need to read the license to see what care must be provided. After that have them send you a contract to go over. Then I would call and ask about initial and on going training. You do not want to find any red flags in these three areas.

Beachfan

Ed, I think where you live might impact your choices.  I am in PA; stand alone MCF’s are private pay from start to finish.  When/if the money runs out, the resident must move.  DH is at such a place. Thankfully, we can afford it.   There is also a very nice SNF near our home with a Memory Care wing attached which has a very good reputation.  The SNF does accept Medicaid.  However, the monthly fee at the SNF is more than twice the monthly fee at DH’s MCF.  We would have to private pay for the SNF and I’m not sure we would ever qualify for Medicaid assistance based on income, assets, etc.  Also, DH has no physical ailments, so he really does not need skilled nursing care.  

You are wise to start pre-planning “just in case”.  It can be confusing and overwhelming.  Best wishes.

Ed1937

Thank you all for the good pointers. I told our daughter that I wanted to get this done before she is looking for a nursing home for her mother, and a funeral home for me. She will go with me to screen different facilities.

harshedbuzz

Mayor Ed-

Unfortunately, a lot of this decision will be made for you around the financial piece and where you live. 

If you have sufficient assets to pay for MC for a couple of years, you would have the option to start as self-pay at the MCF and transition to a Medicaid bed (in the same or a sister part of the facility) after spending-down. Your state will determine whether that Medicaid beds are available in MC or only in a SNF. I seriously considered moving dad to a neighboring state for MC because it would be covered if he lived long enough. 

When we placed dad, I toured about a dozen places-- and narrowed the search down to those which had both MC and SNF and accepted Medicaid. (my state does not fund MC beds so he'd not only need to qualify financially but also in terms of the care needed) It's a good idea to scope out the SNF associated, too, as she might need to spend time there after a hospitalization or if she needs rehab after a fall/fracture. My mom's first choice- that didn't offer dad residency- had a hybrid MC/SNF for residents on Medicaid and those who needed skilled nursing. It was kind of a watered-down version of their MC wing. 

My dad was able to live out the rest of his life in MC. The place we chose (my first choice) had a free-standing MC only building; he would be transferred to a SNF in a different building on the same campus. He got excellent care but he didn't need "medical care". They didn't even have an RN on staff; their DON was a LPN taking classes for his RN. If they needed an RN for some reason, one came from the SNF next door. At home he was as non-compliant around hygiene as you describe your DW- plus he battled wills over meds and eating/hydration- but he was a very different person in care. He saw the staff as professionals helping him and turned on the charm. The staff were great and he enjoyed some of the music activities and parties. 

My aunt lived a long time after her diagnosis. She lived in a MC unit for about 4 years; she thought she was living in the married students housing at Rutgers just after the war and was happy as a clam doing crafts and going on a weekly lunch outing. Her guardian eventually transferred her to their SNF in order to get better hygiene care (in MC they guide and prompt- in SNF they get in there and brush teeth) but she spent her days in the MC side doing activities and outings the first 3 years she was in the SNF unit. 

In your shoes I would look for flexibility and also for the availability of a medical team that comes to your DW rather than the other way around. Dad's MCF had a visiting gerontologist, podiatrist, doctor of optometry, geri psych and dentist which made the logistics of care easier for us. 

HB

Ed1937

Thanks, HB. I appreciate the pointers.

David J

Ed- After the water glass  incident, I am very glad you are looking at MCFs. You have gotten really good advice here. In my state (CT), MCFs are licensed as AL. Using that as a baseline, the MCFs I toured added services such as medication management, ADL assistance, activities, etc. I found different MCFs provided varying levels of care in these areas, and some wouldn’t accept residents if they needed too much assistance. Some promised end of life care, but routinely shipped residents out to SNFs or hospice. Others keep their residents in the facility and bring hospice in at the end. In the 7 months my wife has been in MCF, two residents have declined and passed, staying in their room at the MCF until the end. 

Of course, financial considerations affect the decision to place, and where to place. If I had been relying on Medicaid, or anticipating her going on medicaid, my choice would have been harder. 

After placement, my wife has had several trips to the ER. The first time, I was out of town, and the MCF handled the whole thing. The other times, I was with her in the ER. Those times were extremely frustrating and anger inducing, not just because of the usual ER BS, but also her behavior. Her behavior and my emotional response reinforced that I had made the right decision in placement.

Good luck and thinking about you and your wife. 

Marie58

Ed, sorry you're getting to this point, but glad you're looking ahead and not waiting until the last minute. You've gotten a lot of good tips so far. I wish I'd known more of this when I was at your point. 

My DH has been in MC for about 19 month now. He's late stage 7 and on Hospice. There were two things I didn't ask specifically about and wish I had known to ask. One was about staying there until the end of his life. I was told he could, and I knew others that had. But what I didn't know, was that when they reach a certain level of care (i.e. bedbound, unable to feed himself, etc) he could be asked to leave unless he was on Hospice. Fortunately, when my DH had a major decline and became bedbound in Nov, he was already on Hospice. Phew! So ask about that. The other was handfeeding a bedbound resident. As I posted before, I was going in and feeding him lunch and dinner after that decline in Nov. They were feeding him breakfast. The MC and I have worked it out and they are now feeding him every meal except Sat and Sun lunch. But for four months I had to do lunch and dinner 7 days per week, or arrange for a friend or family member to do it. I had seen them assist and handfeed residents in the dining room on occasion while he attended the day program there, so guess I assumed it wouldn't be a problem.  Never assume and ask lots of questions!!

You're a great husband and caregiver. Best wishes to you both as you move into the next stage of the journey.

DrinaJGB

I am so sorry. This horrible disease takes 2 lives--- in one way or the other.

Ernie123

Ed: I have a couple of points for you to consider. I read your previous post and almost commented on it to suggest you are reaching the time to plan the move. So I am glad to see this post. 

I was in your position three years ago. The frustration,  sadness and unrelenting stress of caregiving can literally drive you crazy. Not to mention guilt and fear. Anyway, in our situation my DW was frequently delusional, paranoid and becoming violent with me thinking I was an intruder. So the decision to seek placement was made for me in a way. I couldn’t deal with that sort of  behavior alone.

Definitely seek out a memory care facility. The staff will likely be trained in dementia care. Hopefully they will have chosen to work with dementia patients. I was told my wife would respond very differently with PSW caregivers than she did with me. Very true. She is much more cooperative. Time for shower? They take her by the hand and off she goes. The staff keep the tone of the unit calm and low key. Music, simple group activities, routine.  She lives in a locked facility with two residential “ cottages “ with seven residents in each. Most of the time is spent on the common living area. A typical long term care facility would be larger, have more activity with unfamiliar people coming and going. This can be upsetting to a dementia patient.

Making the move sooner than later will give your DW the chance to adjust to a new environment before her cognitive abilities get worse. No one wants to make this transition but making it now when you are in control is better than waiting until a crisis of some sort happens and  a move is forced upon you. My wife improved after the move mainly due to the positive social environment of her unit. It was much better for her than being alone with me 24/7. Before the move we were both pretty miserable. She picked up on my stress and that contributed to her agitation and confusion which caused me more stress and so it went. That tension is not present in her memory unit. 

I realize I am lucky in that the memory care facility my DW is in was designed and staffed for optimum dementia care. The PSWs that work there are angels. They know my wife now as well as I do and know exactly how to handle her. They like working in the unit because of the tone and the personal relationships they build with the residents. If you can find a small facility with trained staff the move will be a blessing for you both.